HI. I’m Wendy, Charlotte’s and Marcus’s mum. We enjoy doing things as a family, and enjoy new experiences. Despite Marcus having Down Syndrome, we basically get by like any ordinary family. Of course things aren’t always as straightforward as we would like them to be, but isn’t that normal?
To achieve what we want, we obviously need to take into account Marcus’s current limitations. Most revolve around his mobility. What we have found to be true in our case, is sometimes special needs equipment is essential and in other cases shop purchased items fit the bill. Special needs equipment can be very large and heavy, but extremely safe and durable. Shop purchased equipment can mean shelling out from your own pocket, and extra consideration whether it fits our sons need. Most of the time with shop bought stuff you will need to compromise on something. These on the other hand are often less bulky, and pack easier.
Below I have listed out what has, and is still, helping us to help him get about.
So the one we use, is basically a booster seat, with the back and headrest. We used this for Charlotte when she was little. It can be easily moved from one seat to another, and the head supports means Marcus can sleep quite comfortably. Just pulling the base forward a little enables him to lay back a bit. He is 7 years old and is now able to support his own body weight, so this does the job nicely for him.
It’s the Britax Evolva 2 3 but I’m not sure you can get it anymore. This is the closest one I can find.
We find pushing the seat over the buckle fitment keeps little fingers from unbuckling himself.
Backpack / Baby Carrier
Again for this, we purchased it from a walking shop. Out of everything we’ve purchased for Marcus, this came top. If I remember correctly, it cost £120 at the time.
It was worth every penny. It fits both Dan and myself comfortably due to the excellent ability to change the length straps. The most important area to fit it is around the waist. This means your hips and legs are taking the weight, not any dodgy back muscles.
We purchased the top of the range one. I can’t quite remember how it compared to the lower spec, but I’ll list it’s benefits.
It fit Marcus from 6 months to 6 years. It came with sun canopy and a full covering rain cover, with a sturdy frame which allowed plenty of headroom.The seat lowered for growing room. It has a comfortable harness which securely fits the child. It also had a washable pillow so he could sleep as we burnt off our previous night’s dining experience. One very useful features was it had an anchor point, which is basically a foot hole so you can steady the carrier while putting the child in/out of it. This is a great safety aspect, especially when Marcus had other ideas. It also meant, I could happily use it when Dan wasn’t with us.
This baby carrier has been all around Europe with us and had its last iconic trip walking around the top of the Eiger. It’s now been passed on to and family member. Definitely an heirloom.
Prams / Buggies
So we were able to apply to the ‘wheelchair services’ for funding. It’s a service in the UK that can help you get the equipment you need. Marcus was 3 years old when we made use of this service.
At the time, basically the only special needs buggy available was the McClaren. This was the one with the red and white striped deck chair fabric, you know the one. However we knew this wouldn’t be suitable for our outdoor lifestyle. As well as our family holidays, we often visit my parents who live in the Lake District, and whenever possible, head to the hills. We had heard of another family who had managed to use the funding to source their own ‘all terrain’ buggy. We explained our situation, and they agreed we could as long as it fitted Marcus’s needs.
So we purchased the ‘XC Summit’ baby jogger.
One of my requirements, was a three-wheeler buggy with a front wheel that could swivel for around town use, and fixed for the country walks. This was a great pram with a few good features. All three wheels were detachable, good for car travel. It had a good suspension system. A hand brake that was attached to the handlebar. A small feature, but great when going down steep slopes with a growing child. Plus the pram looked nice. Call me vain, but just because Marcus has special needs, doesn’t mean he shouldn’t look trendy. We did have a problem with the frame snapping after about 18 months. It was replaced with a new one within a week or so. We were able to loan another pram arranged through Marcus’s Occupational Therapist for that period of time.
So we can apply for funding for a new pram every 3 years. However the ‘XC’ still had plenty of wear in it, and still fit Marcus comfortably. So we waited a little longer. The next pram however wasn’t as easily sourced. What had changed in those few years however, was how many all terrain special needs prams were now on the market. So why the problem? Trying to find a larger buggy with a fixed/swivel front wheel was a challenge. I know other families who have two buggies, but we simply don’t have the space. Plus, when on holiday, which one to take?
After scouring the internet for hours, we finally found one that met our needs, ‘Special Tomato’.
Please don’t ask me why it’s called that,I have no idea. Fortunately, there was a supplier who lived only 30 minutes away. So after a visit and inspection, this is one we chose. The funding didn’t cover the full cost, but not far off. It came with no extra’s, so we paid for the under basket and rain cover. It’s a simple design. It’s a lot longer than the ‘XC’, a bit like driving a bus. The back wheels are detachable, but the front not so easily. We have a huge boot in our car, and it fills over half of it. It doesn’t collapse as easy as the previous pram, but that generally that comes with a bigger pram. One thing I feel it is really missing, the hand brake. Marcus is now heavy, I have a heavier pram, and sadly those steep slopes still exist. It does the job for us, but not as good as I would like it to.
If you want to ask anything about our equipment please do. Also, if you have any things that have helped you please share them.